Tag Archives: disability

This guest post on Parenting with a Disability comes from Alicia Reagan!

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As a little girl, I had so many baby dolls! I named them, changed them into their jammies at night, and played with them as much as I could. I couldn’t wait to grow up and have a bunch of real babies. This was an actual talking point with my husband before we married. I wanted to make sure that he loved the idea of a large family as much as I did. He did.

In March of 2009, I was 5 months pregnant with my 6th baby. I got very sick and was in a tremendous amount of pain. I lay down to take a nap and when I woke up, I was completely paralyzed. After much time and testing, I was diagnosed with Idiopathic Transverse Myelitis. Paralysis, and a life raising all of my children from a wheelchair, was NOT in my game plan.

After almost 5 years in my chair, and having a houseful of kids that range from toddler to teen, I have a few things I would like to say about parenting. There is much written about parenting a special needs child, but little written about being the parent with the special need. Here are some things that I have learned.

1.We are capable of being great parents!
I cannot tell you the times that people will be shocked to learn that as a paralyzed woman, I am capable of having children. Women in chairs can conceive and carry a baby like other women. Modern medicine can help couples where the man is disabled. Depending on your disability, you will definitely have to plan around your disability and your specific needs. Our disability is a factor in having children, but it is certainly not the deciding factor. If you want a family, go for it!

2. My children are not my aides.
I think this is important to remember. I see people look at my children with such pity at times and it really makes me want to scream! They are my kids. They do not suffer. They do not take care of me. We are a big ship to run….even before I became paralyzed! My children do their share of chores. I want them to know how to make their beds, clean their room, do laundry, cook, and take care of the yard. They did these things before my chair and they still do them. I love how my children love me and desire to help me out, but my children do not take care of me.

3. We can give kids what they need.
Typical parenting has many physical stereotypes. Commercials are full of dads throwing footballs, moms running the soccer car pool, hiking with your family….are you feeling all of the physical activity?I think one of the reasons that disabled parenting gets such a negative response is because we don’t necessarily fit the typical active parenting mold. I don’t think we have to be all that to give our children what they need.

I think that the most important thing that you can give children is not activity. It is love, attention, quality time, and focusing on their precious hearts. My kids love activity, and I get in on as much of it as I can, but realistically I cannot do what I used to do with them. Do you know what I have noticed though? I have a lot more time to just sit and listen to them. I have a lap that is always available for my little ones to climb up on. There is more time to watch cartoons with them on days I don’t feel as well. I have had more one on one time with my kids since I became paralyzed than I did before. Our relationship has become much better…not worse. Even with a teenager!

4. We will improve society.
As parents with disabilities, we are raising kids who will enter society with a heart for the disabled. What a gift that we wish many more had! My kids already find the special need kids to be a friend too, and my older ones have already told me that they would have no issue at all with marrying someone with a disability. I love that!

5. Being a mom, helps me deal with my disability.
My kids are one of my greatest reasons to deal with the frustrations that can come with being paralyzed. They are watching me. They are learning, by my example, how to handle hardships in life. They are learning about attitude, confidence, acceptance, resolve, determination and happiness. Knowing they are watching me handle this disabled life makes me humbled to show them the right way. It is a wonderful reason to get up and get going in the morning.

Being a mom is a precious gift. I did not choose to become paralyzed, but if it had to happen, I sure am thankful that I am surrounded by my children. Life is beautiful…especially when you are a parent!

SPINALpedia is all about finding the best ways to adapt to life with mobility limitations. Check out this guest post from Emily Ladau about her own adaptations!

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Celebrating Adaptive Uses of Kitchen Tongs and Ottomans

My family and I often joke that our house should have a sign in front that reads “Home Healthcare Store.” In actuality, our little joke isn’t far from reality; we own enough adaptive equipment that if we put it all in one room, it would look like we have a combination physical therapy office/rehabilitation clinic/medical supply store. We have a little bit of everything, ranging from items like weighted medicine balls and stretchy therapy bands to custom equipment such as walkers, braces, and wheelchairs. And while I could fill an entire blog post with a list of all the things that make my life a bit easier, I’d like to focus on the little things I use each day – both true adaptive tools and repurposed household items – to be as independent as possible. After all, it’s the little things that make the biggest differences.

Three different types of adaptive reaching sticks hanging on white hooks, surrounded by several multi-colored necklaces and a black and white flowered purse.

One of my favorite adaptive tools, a reaching stick, can be found in nearly every room of my house. They are strategically placed; you can see three different kinds hanging on the same organizer rack as the necklaces in my bedroom (I brought 2 home from college), another resting on a hook in my bathroom, and so on. If you’re not familiar with the wonders of reaching sticks, allow me to wax poetic about them for a moment. They are amazingly clever tools made of metal and plastic. Also known as grabbers or reachers, reaching sticks may as well be known as a key to independence for me. I’d say I drop things or knock things over at least three times a day, if not way more than that. While I’m lucky to be agile enough to bend down and reach larger items off the floor, I have elbow contractures that often make it difficult to reach the distance from my wheelchair to the ground, especially to retrieve smaller objects. Assuming I don’t knock over something like, say, an entire box of little colored beads from my craft drawer, or my entire bottle of multivitamins, it’s never difficult to pick up after myself with my trusty reacher. It eliminates having to rely so much on other people for help, and I’m sure my dad appreciates fewer exclamations of “Oops! Daaaaaaa-ad!” following the sound of a crash.

Using a pair of kitchen tongs to pick up M&M’s candies.

Of course, it would look a little silly to always carry around a giant reaching stick. I suppose I could refer to it as my scepter, since I sit on the royal throne of my wheelchair…But in reality, my mother, who is also a fan and frequent user of reachers, has come up with a rather inventive solution to avoid the looks one might receive when toting around a long metal stick with a claw: carry a pair of kitchen tongs instead! I mean, there’s nothing less silly than kitchen tongs, right?! (A word of warning for all novice adaptive kitchen tong users: be cautious not to bring them into restaurants with salad bars or house ware stores like Bed, Bath, and Beyond. You might end up having a lot of explaining to do if people think you’re stealing things!) In all seriousness, though, using tongs as a smaller version of a reaching stick demonstrates one of my favorite ideas: disability breeds creativity.

Because I was born with my disability, my life has always necessitated creative adaptations to make things easier or more accessible. Over time, thinking up creative solutions has become the norm for me to be as independent as possible on a daily basis. For instance, in most houses, you might find an ottoman near a big comfortable chair for people who are inclined to put their feet up at the end of a long day. And while I definitely love to put my feet up in the evening, you won’t find me using my ottoman to rest. While most feet end their days with an ottoman, mine start the day with one. I have a small ottoman right next to my desk in my room, ready and waiting for me when I’m about to put on my shoes.

Putting on my shoes by resting my leg on a turquoise ottoman!

When I was younger, I needed help putting shoes on every morning because I couldn’t reach my own feet. (I know, you’re wondering why I didn’t just use a reaching stick if this is a reaching issue, but alas, a reacher cannot solveeverything.) By the end of elementary school, however, I realized that I didn’t want my parents to assist me in getting ready every morning for the rest of my life. So, we problem solved, searching for items at the perfect height for me to lift my legs onto so I could reach to slip on my shoes. After lots of searching, we found a display of small turquoise ottomans at, you guessed it, Bed, Bath, and Beyond! (Don’t worry, we didn’t bring the kitchen tongs with us!) Now, I don’t have to give a second thought to the daily task of putting on my shoes, all thanks to a little creativity and brainstorming.

Adapting things to meet the needs of my disability is not always quite as simple as taking a quick trip to my favorite house wares store, but I embrace little victories and creative solutions. If everyone, disabled and nondisabled, took the time to consider the ways in which we must all adapt, and the ways that many barriers or obstacles are unnecessary and even preventable with a little creative thinking, this would be a fantastic step in the right direction for disability access and equality.

What are your favorite adaptive tools or ways to adapt things? I love to learn new creative ideas!

A bit more about Emily Ladau:

Emily recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. During her undergraduate career, Emily was actively involved in disability advocacy initiatives. She did a part-time outreach internship at the Suffolk Independent Living Organization and worked as a mentor for a student with Asperger’s syndrome. Emily’s areas of interest include encouraging all disabled people to become self-advocates and researching portrayals of disability in the media, a subject on which she just completed an honors thesis entitled “A Study of the Influence of Popular Television on Perceptions of Nondisabled People Regarding Physical Disability and Romantic Relationships.” She recently completed a summer internship at the Association of University Centers on Disabilities (AUCD) under the auspices of the American Association of People with Disabilities (AAPD) internship program. Emily is a passionate self-advocate and is pursuing a career in which she can use her communication and writing skills as a means of positive change for all disabled people.